Mommy's Back! or, Memoirs in Odd Progress

July 27, 2016

 Day 29, this time around...

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Mommy's back! She came into town late last night and got to the hospital early this morning, about 6am, where she found James had already been awake since 4am playing iPad videos. He’s truly addicted now: #techaddiction…

Of course, getting up at 4am is tiring, so Mommy and James were both soon again asleep, and woke later in the morning for breakfast, rounds, and today’s activities.

Mommy and James had a nice morning walk to the lab in another wing of the hospital for today’s X-ray -- usually they just wheel a mobile X-ray device into the room, but today they wanted both standing frontal and standing side-view images to better visualize the problem -- and then they headed to the playroom for train and castle and kitchen and toy animal playtime.

Meanwhile, the question everyone wants answered is: is the condition getting better or not?

This is the odd progress part.

Since we’ve been here this time around, James’ chylous effusions got better, then worse, then better again, then worse again, and since the beginning and meanwhile what was there and what was leftover is/was what is called loculated, or congealed in layers, like a disgusting booger or pus cake inside the lung cavity, which is more common in cancers and pneumonia and other like infections (empyema is a term they’ve used to compare it to, but this isn't that), then that started clearing up, then wasn’t clearing up enough or fast enough, then it was, then we were waiting for CHOP to say something, then we weren’t, then we were, then…

Yeah, like that. Odd.

Just like last time, I think it’s important for folks to remember that, because there is so little known about this, the easiest way to describe this is to think about this as something like a cancer that has come back from remission, and now it’s just playing with us.

Unlike most cancers, however, the long-term solution here isn’t just about a fix to the effusion (like plugging a leak). The long-term solution requires we figure out why it recurred in the first place, so we can prevent it from coming back again. This is, after all, the same complication from last summer, so we have to figure out why it’s back.

There are dozens of doctors here at NYP, and more at CHOP, all working hard to fix the leak, prevent another future leak, and get James home, but still not many answers...

So, while there’s not much to report in simple terms beyond smiles and reunions, and even less to report in terms of James’ odd progress (did Kirsten or I mention yet that James has never yet “seemed” unhealthy to anyone? This life-threatening issue is purely an internal one), sometimes the smiles, the reunions, and the odd progress reports are progress enough.

Thanks again to our families and friends who have supported us best: by visiting and sending happy thoughts, prayers, and well wishes; by bringing and sending foodstuffs and cards and colorful things to plaster on these drab hospital walls; and by letting mommy and daddy decide how best to organize the crazy logistics needed while our family deals with this unexpected oddness.